Another medical miracle
Or, “How I became even more disappointed in the medical practice in the USA than I already was”.
I’m getting older—half a century now—and have recently been having health problems. It started with soreness in my right hip about four years ago, gradually getting worse and worse over time. At one point I damaged it by sitting in a funny position for too long; later on, I did what I thought was a very normal set of lunges in the gym that made me almost unable to walk for months afterward.
Then, about a year ago, I started having issues with my feet. At first, they were a little sore. They got worse and worse, eventually getting to the point where I again couldn’t walk comfortably. They just would not heal, no matter how much time off I gave them.
In the past three years, I’ve seen half a dozen doctors. Hypotheses ranged from early onset arthritis, to joint damage, to tendon damage, to disc compression in my back. Physical therapy helped a small amount, but the gains tapered off quickly and did not last. I was making no progress, and had simply restricted activity in my life to the point where things were tolerable. None of the doctors had any idea what was going on, and every visit was hundreds of dollars to be told things I already knew. One doctor prescribed exercises for the elderly to build muscle tone, without even bothering to ask about my current exercise regime or current state of fitness. (At the time I could do sets of 40 push-ups and one-legged squats to the floor and back.) To say that I was frustrated is an understatement.
A bit over six months ago, I began to wonder if perhaps this was a side effect of the low dose statin I had started taking. The problems started prior to my taking the statin, but I found reports of statin side effects that looked vaguely similar to my issues. Perhaps I had fouled my cholesterol metabolism?
I concocted an experiment to stop taking the statin for a few weeks, and eat a ton of eggs to try to get more cholesterol in my system. I didn’t know at the time that dietary cholesterol makes very little contribution to total cholesterol levels, but that turned out to be a good thing: I saw what seemed to be noticeable improvement. The next couple of months I learned about cholesterol metabolism and ran more experiments, eventually narrowing things down to the point that I knew statin use was not responsible. The eggs were the active ingredient.
But how does that make any sense?
At some point it occurred to me that eggs also contain protein, that bodybuilders supplement protein in order to build muscle, and that vegetarians could get protein deficiency. With ten minutes of investigation, I discovered that my preferred diet is pretty close close to vegetarian, and had slowly been shifting to become more vegetarian over time. Did I have a protein deficiency?
Lacking any other options, I used the power of “moar dakka” and tripled the amount of animal protein in my diet. Since then, both of my long-term multi-year health problems have gone away, all in the space of the last three months. I can hike for miles again, I can lift heavy weights, and I heal after taking damage. It’s amazing.
What has not healed is my opinion of medical practice in the USA. How on earth could something like this go undiagnosed for years? How could something as fundamental as protein deficiency not be a standard, ordinary thing we test for? How could half a dozen smart, capable, and highly trained doctors miss something like this repeatedly? How is it that the best modern medicine can do is say “go to physical therapy and hope it gets better”?
To say that I am disappointed quite undersells my change in opinion. I previously took what doctors said with a grain of salt but largely believed them. Now, I take what doctors say and run it through the same sanity check filters I use when surfing random web sites. Diagnoses and recommendations from my doctors are now strictly advisory: it’s clear that the person closest to my problems is me, and it’s clear that doctors know at best only fractionally more about what’s going on in my body than I do. And further, I have more incentive to figure it out, more time I can spend digging into it, and I can run experiments to collect data instead of guessing.
(If only we had a dedicated fraction of the population that were trained experts we could rely on to help us understand, fix, and manage problems with our bodies!)
This is not how an effective society runs its medical system. This is not how medicine needs to be, if it’s going to be effective. This is Moloch in action; this is institutional failure. I don’t know how to fix it, but at least I know enough now to begin protecting myself from it.
I just wish I didn’t have to.
I’m in biomedical engineering and I spend a decent amount of time trying to understand the psychology of doctors and the behavior of the medical system. I am curious—in your odyssey, what is the maximum number of visits that you had with any one doctor?
The reason I ask is that it loosely appears to me that, if the condition isn’t life-threatening, many doctors act as if they only expect to see us once. They send us home to recover on our own, perhaps with a few self-care tips, or with a diagnosis and a referral. There isn’t a single person qualified to diagnose and prescribe who “owns the ball” for your condition. There’s a clinic called the Lanby (launched by the wife of the author of waitbutwhy, which has a writeup on their business model) in which you’re seen by the same provider at every visit, and where your annual membership covers an unlimited number of visits. It’s $325/month which is much more than I, for one, spend on healthcare annually, and it’s not a replacement for health insurance, but this incentive structure seems to me like it would motivate doctors to actually help their patients get well efficiently. I’d be curious to know how they’ve fared in the couple years since the writeup.
Yeah, a big part of the problem was expert ping-pong. I only saw one doctor twice. It’s part of the global dysfunction I observed. Because of that, I have been seriously considering signing up for concierge medicine, which has a similar business model to what you describe above.
Concierge medicine is definitely a good general keyword for people to know about if they have, or may one day develop, a chronic mystery medical condition. Virginia Mason Franciscan describes their version in a way that makes it sound specifically designed for your sort of issue. A recent article I found says it can be obtained for as little as $1200/year, but it sounds like about $3000/year might be a more typical price.
Hm, so, I definitely agree about having very little faith in the modern medical system’s ability to figure out most problems. I have a lot of experience with this myself and it’s rough — I’m sorry it was bad for you and I’m glad you got better!
However, I’m pretty surprised that your protein levels were never tested! When I go to a doctor in America and tell them that some new thing is mysteriously wrong with me, their first recourse is pretty much always to order blood tests, and consequently I have had my blood protein levels checked six times in the past five years as part of a standard hepatic function panel. I’m not super familiar with the medical field, but from Googling it looks like if you had a protein deficiency, that test would turn it up.
I guess maybe because of the symptoms you were presenting with, no one felt the need to check your liver function? But if that’s the case I’m confused why they do it to me all the time, since one of my main problems is mysterious musculoskeletal pain. Hm.
Funny you should mention this; it made me check my records. It turns out that none of the doctors actually requested bloodwork. However, I do have my own bloodwork, which I do every 4-6 months on my own. Looking through that, what I see for heptatic protein level is 7.2+-0.2 for the past two and a half years.
This includes my most recent test, where I had been taking massive amounts of protein for months. So whatever that test is measuring, it doesn’t actually seem related to the amount of protein the body has available or needs.
ChatGPT explanation of what hepatic protein level measures:
It’s a test for liver function.
Do you have any data in your blood tests for any amino acids?
Our body doesn’t need any proteins, it needs amino acids and proteins are a way to ingest amino acids.
ChatGPT suggests:
It is also possible that his lab values fell just barely within the normal ranges.
Maybe, although the OP does say “How could something as fundamental as protein deficiency not be a standard, ordinary thing we test for?”, so it sounded like it hadn’t been tested at all.
But yeah now you’ve made me want to criticize the whole idea of normal ranges! One time I had a vitamin D deficiency that had me extremely ill for three months and even bedridden for part of that time, but clinically it was only mildly out of range, and the doctor just told me “Your vitamin D level is a bit low” – which I feel didn’t sufficiently suggest that it might be the root cause of the debilitating illness I had gone to him about. In general Elizabeth and others have made me think that reference ranges are a lot more nonsense than they seem, and that they like all things in medicine are more likely to apply to ~tall white men, so I as a non-tall non-white non-man should be skeptical and pay more attention to things that are at the extremes of the reference range, even if they’re not ‘clinically significant’.
(That rant was not directed at you tbc, I just wanted to rant it, thanks)
I had a blood test once as a part of a regular checkup, and I suspected that some symptoms I have might be caused by iron deficiency. But the doctor looked at the results and said “nope, all values are within the norm”.
I told him my hypothesis, and he showed me the scale for iron, with the interval of “healthy”, and he showed me that my results were exactly one pixel above the minimum. Which means healthy, yay! Because it would be a deficiency only if it was at least one pixel below the minimum.
(Then I took supplements anyway and felt better. Of course, chances are it was just a placebo effect.)
I happen to be a tall white man, but I wish doctors distinguished between “normal” and “technically still normal” values. Damn, I am not asking whether I am eligible for disability. I am merely curious about whether there is some trivial action I could take that has a potential to make me feel significantly better.
(Not in USA, btw. Just saying, because the article mentions USA.)
This is why we need a healthcare system in which people can get regular checkups. They should have an extensive medical history on you, that way their comparisons take into account what is “normal for you” and not just whether you’re “normal amongst the population”, since the latter may not even be relevant.
Most of the problem with the reference ranges is that they are usually just intended to reflect what 95% of the reference population will have. That’s much easier to measure than the range which indicates good health.
There isn’t much incentive for any authority to establish guidelines for healthy ranges. So too many people end up equating “normal” results with good results, because normal is what gets quantified, and is usually what is reported on test results.
As a tall white man myself, I’d say that I have one value that’s been somewhat out of range on every bloodwork panel I’ve had in a decade, and no doctor I’ve asked has cared.
I’ve also found that I benefit from more of some vitamins than the ranges suggest I should need, so even for someone like me there’s a lot of individual variation.
Summary: I think you’re right, but the ranges are even more nonsensical than that.
In a later comment, the original poster said that the Total Protein seemed fine. Unfortunately, https://www.ajkd.org/article/S0272-6386(99)70278-7/fulltext suggests that the person looking at the labs would have to know that they ought to look closely at the albumin level, specifically. It wouldn’t be the first time that ”Reality has a surprising amount of detail” where overlooking 1 thing is enough to get into trouble.
It would be unsurprising if the albumin level turned out to be low, if the A/G ratio was slightly off despite the normal-looking total protein values, etc.
As SirTruffleberry said, this situation would be a place where having long-term trends could help.
Disclaimer: I am not a medical doctor nor a nutritionist, just someone who researches nutrition from time to time.
I would be surprised if protein deficiency per se was the actual problem. As I understand it, many vegetables actually have a higher level of protein per calorie than meat (probably due to the higher fat content of the latter, which is more calorie dense), although obviously, there’s less protein per unit mass than meat (since vegetables are mostly cellulose and water). The point is, though, that if you were getting enough calories to function from whole, unrefined plant sources, you shouldn’t have had a protein deficiency. (Of course, you might have been eating a lot of highly processed “vegetarian” foods, in which case protein deficiency is not entirely out of the question.)
That being said, my guess is that you may be experiencing a nutritional deficiency either in sulfur or in vitamin D (the latter of which is a very common deficiency). Plant-derived proteins tend to have much lower levels of sulfur-containing amino acids (methionine, cysteine) than animal-derived proteins, and sulfur is an important component of cartilage (and of arthritis supplements). Both sulfur and vitamin D have been investigated for their role in musculoskeletal pain and other health issues (although from what I have read, results are more ambiguous for sulfur than for vitamin D with respect to musculoskeletal pain in particular). Eggs are particularly high in both sulfur (sulfur smell = rotten egg smell) and vitamin D, so if you were low on either one of those, it makes sense that eating a lot of eggs would have helped. It would be very interesting to test whether either high-sulfur vegetables (such as onions or broccoli) or vitamin D supplements would have a similar effect on your health.
Congrats! I went through this thought process as well, and one of your three hypotheses above seems like the right one. Vitamin D isn’t the issue (I have tests for it and have heavily supplemented for years), and sulfur itself isn’t an issue (onions and broccolo are both pretty big in my diet). However, the lack of sulfur amino acids is the lead hypothesis.
Over the years, I had slowly shifted my diet more and more plant based: lots of vegetables, with occasional meat and a piece of fish every couple of days. As you mentioned, not all protein is created equal. While both vegetables and meat both contain all 20 amino acids, the ratios matter. Bodybuilders eat animal protein instead of vegetable protein for very good reason. I try to be active and try to keep muscle on my frame, and the plant based sources were just not providing enough of the key unsynthesizable amino acids.
Unfortunately, I do not have useful links for this—my understanding comes from non-English podcasts of a nutritionist. Please do not rely on my memory, but maybe this can be helpful for localizing good hypotheses.
According to how I remember this, one complication of veg*n diets and amino acids is that the question of which of the amino acids can be produced by your body and which are essential can effectively depend on your personal genes. In the podcast they mentioned that especially for males there is a fraction of the population who totally would need to supplement some “non-essential” amino acids if they want to stay healthy and follow veg*n diets. As these nutrients are usually not considered as worthy of consideration (because most people really do not need to think about them separately and also do not restrict their diet to avoid animal sources), they are not included in usual supplements and nutrition advice
(I think the term is “meat-based bioactive compounds”).
I think Elizabeth also emphasized this aspect in this post
The potato is closest to meat in having about 36 calories per gram of protein and all essential amino acids, but it’s still only about 30% of the way to being as proteinaceous as non-lean steak or 15% of the way to lean steak.
As a highly active exerciser, OP may have needed up to 2.5x the protein as a typical person, while only requiring 40% more calories. So no, low-meat diet that would sustain the protein needs of a low-activity person doesn’t always straightforwardly translate to a high-activity lifestyle.
An 80 kg man at low activity might need 64 g protein/day and 2500 calories. If he starts exercising intensively, he may need 3500 calories and up to 160g protein. It’s not possible to do that with potatoes − 160g of protein from potatoes entails eating almost 6000 calories.
The only thing that would get you there on a vegan/vegetarian diet is protein powder, which is as protein-dense as lean steak at about 100 calories/15 g protein.
Not at all! 100g of beans is 8.9g protein and 132 calories. Eating 2500 calories of beans would give you 169g protein. So you can use just 1⁄3 of your calorie budget to get 64g protein. Even pasta is 5.15g and 131 calories in 100g, so getting 64g protein would use 2⁄3 of your budget.
Now, beans and wheat aren’t complete proteins on their own, but combined they’re pretty good! And since beans are so protein-dense you have a lot left in your calorie budget to work with.
I endorse this—I was reacting to the conventional way people use the word “vegetable,” which I don’t typically hear applied to legumes or to grain. But for the purpose of getting high protein on a low meat diet, it’s obviously not important it be from a vegetable per se.
Broccoli is higher in protein content per calorie than either beans or pasta and is a very central example of a vegetable, though you’d also want to mix it with beans or something for a better protein quality. 3500 calories of broccoli is 294g protein, if Google’s nutrition facts are to be trusted. Spinach, kale, and cauliflower all also have substantially better protein per calories than potatoes and better PDCAAS scores than I expected (though I’m not certain I trust them—does spinach actually get a 1?). I think potatoes are a poor example (and also not one vegetarians turn to for protein).
Though I tend to drench my vegetables in olive oil so these calories per gram numbers don’t mean much to me in practice, and good luck eating such a large volume of any of these.
True! I am a broccoli fan. Just to put a number on it, to get the proposed 160g of protein per day, you’d have to eat 5.6 kg of broccoli, or well over 10 lb.
Not to rain on any parades… but don’t eat spinach guys.
If you try to fix joint pains by getting more protein from kilograms of spinach or kale, you will be severly disappointed. I’m talking about oxalic acid. See my comment.
It is more likely though that you will get kidney injury or kidney stones as a first symptom. Some people have died of imbibing big green smoothies, which presumably contained spinach. Everyone knows rhubarb is bad because of oxalic acid. Spinach contains the same stuff in high concentrations.
This is one of the things that irks me when I hear medical professionals whine about how AI diagnosis is all hype because no machine could match the sophisticated pattern matching abilities of a real trained doctor. That’s fantasy land stuff! Maybe at the high levels doctors are like that, here down on Earth most GPs for most problems have effectively an algorithm that’s like a two layer decision tree at best. Is it because they don’t have enough time or resources to dedicate to each patient? Maybe, but even that means that freeing up some at the easy tail end of diagnosis would improve things for everyone.
It’s worse than that. If you ran a machine learning algorithm to generate that decision tree based on all the papers from an authoritative source on best treatment practice/most probable diagnosis given a set of signs and symptoms, you would arrive at a limited set of possible decision trees. Assuming certain things about the algorithm you may arrive at one and only one tree.
This means that if doctors are rational and following best practices they cannot agree to disagree, all doctors shall give the same probability distribution of diagnoses given the same input information.
This is trivially untrue, and obviously AI systems could be built with this correctness property. (Untrue from a combination of overfitting and errors)
When I’m asking ChatGPT (even telling it that the diet is vegan) and ask for possible diagnosis for the then protein deficiency is not in the top 18 diagnoses.
The problem of the OP seems that his problem was far from being the most probable diagnosis given the current state of medical knowledge.
I think you could reasonably argue that your diagnosis shouldn’t always be the most likely one, though really, we’d want a full spread of the logits (if only to weigh the costs and benefits of possible treatments or further examinations). Obviously doctors don’t actually do any of that. Many have barely a grasp on probability. Once I was discussing a rather trivial surgery with a consultant, non vital, just quality of life stuff. Turns out one of the possible failure modes was “death”. That sounded worrying so I asked more about it. Doctor told me not to worry, odds are less than 1%.
I was like “Ok, do you realise technically a 1 in 101 chance of death for a non necessary surgery that has only uncertain odds of even fixing the problem is quite high?”.
I had to investigate the thing myself, turns out odds were more like 0.05%. And anyway a different doctor managed to improve my condition with pharmacological methods alone.
Correct it should be taking into account the distribution of possible diagnoses, weighted by probability, and then the same done for each action you consider. It ends up being a combinatorial number of things to consider—trivially beyond human intelligence. The AI system need not be very smart just willing to actually do all the multiplications of these residual probabilities.
And yeah for considering whether to use an experimental drug or treatment, same idea. Whether it’s “sufficiently safe” depends on the situation.
And you have to learn from all the outcomes.… something doctors don’t get to do. All the outcomes. Not just their patients, or everyone on the floor, or the city, but every patient in the world you have data on.
Ultimately a rational world would revoke a doctor’s license immediately the moment they override an AIs recommendation without new evidence or some justification.
I think there is a point that absent such data (which we don’t have at that scale, and acquiring it would be non trivial in terms of organisation, accuracy, safety and privacy issues, and so on), you need to use mechanistic knowledge of the human body and its processes to form good priors. Fair enough, but I very much doubt most doctors remember, or dare apply, that much physiology; the body is notoriously complex and chaotic and very often even state of the art knowledge is baffled by its interactions. That said, “hey, muscles need protein to keep in shape, so maybe protein deficiency could cause this?” is exactly that kind of basic mechanistic insight, and apparently no doctor got it. It’d be hilarious if GPT-4 did instead; it doesn’t even sound much of a stretch.
Well, hindsight is 20⁄20. I’m not that confident that I’d be able to suggest “obvious” association if I were given a few clinical case without the answer attached (this seems like a lost opportunity here OP).
To be clear, the doctors in OP’s anecdote do seem somewhat subpar, (and revoking a doctor’s license if they regularly override an AIs recommendation without new evidence or some good justification sounds like a pretty good idea provided AI gets reliably better results than humans, but you’d have to find a way to make the doctors want to stick their neck out in the few case where the AI is wrong) but we should refrain from piling on based on one second hand anecdote and some personnal frustration.
I could very easely write up a true story about ANY profession depicting how incompetent some of them are. So either everyone is incompetent, or I just don’t know enough about what they do to trully evaluate their work… I would rather err on the side of humility (I’ll agree that ideally we shouldn’t err at all) and charity.
My original point though was less “doctors are dramatically incompetent” and more specifically “when medical diagnosis by AI is discussed, doctors raise an unrealistic bar that most of them aren’t actually able to meet”. I am willing to accept the fact that people make mistakes and are limited, but that’s exactly why they should welcome with some humility the option of tools that supplement their memory and ability to draw connections. Instead most responses I see to the idea of AI diagnosis seem to suggest that doctors possess this strange mystical knowledge of the human body that allows them to deduce correct diagnoses from the faintest of signals by cross-referencing tiny symptoms, which is honestly ludicrous. 99% of medical diagnoses are “if you have symptom, you probably have [most common disease correlating with symptom and possibly your sex and age]”, and that’s about it. No one is saying AI could instantaneously become House MD.
Even House MD isn’t House MD. My mom, a retired physician, hated the show because of how unrealistic it was, which surprised me because I knew the people writing the show worked hard to get the details correct. The part that was unrealistic, was that, in the real world, you usually don’t need a House-style absolutely correct diagnosis to successfully treat someone, even when the patient really does have something weird.
At the beginning of one episode, after the patient’s symptoms were revealed, she said, “When someone shows up at a hospital with these symptoms, you give them [this treatment].” At the end of the episode, after Dr. House carefully figured out exactly what obscure problem the patient was suffering from, the treatment they gave the patient was exactly the same treatment my mom told me at the beginning of the episode.
I… completely agree with you… so I guess I wasn’t as clear as I thought I was being in my last post. Well, self assesment of communication skills updated, and lets celebrate.
But just checking, do you mean AI (meaning ChatGPT, since it’s the most sailent exemple, even thought it isn’t really an AI) TODAY (obviously in a few years it very likely will be much more capable) is better than a doctor in some ways? because I can provide plenty of exemple question you can give to chatgpt and to your doctor to compare how pertinent the response.
https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2804309 Suggest that ChatGPT already outperforming doctors on Reddit.
Mmmm, I’d be interrested to see what happened in the 25% of the case where the doctor was better. my personnal experience trying to draft my work shows that when ChatGPT fails, it’s spectacularly wrong. And ChatGPT’s glibness might give it an advantage in perceived accuracy. So yeah, it can be used to draft some stuff, thats basically its best use in most cases, but I really wouldn’t trust it without doctor (or lawer, coder, whatever is appropriate) supervision yet.
Being slightly more empathic isn’t better if it isn’t sufficiently reliable.
here is an exemple ” my bloodwork came in, I have blood potassium at 20 mmol/L and my calcium is undetectably low, what does this mean?” chatGPT always spouts irrelevant stuff about hyperkaliemia and hypocalcemia, instead of realising that those values are way too abnormal to not be some kind of interference (any doctor should realise that, and a really good doctor might be able to say that the blood sample was likely stored in a EDTA tube instead of an heparin tube).
So all in all, I wouldn’t summerise the article by “ChatGPT allready outperforms doctors on reddit” but rather by “ChatGPT could allready be used to help draft doctors letters”. That is a significant nuance.
Well, I did manage to finally find a scenario outrageous enough that it just questions it:
Not really, I think that you could however build one such thing with current tech, probably combining some LLM capabilities and some random forest or other such way to navigate the complexities of actual probabilistic diagnosis. Maybe use a transformer architecture but have symptoms in place of tokens and give the logits over possible diagnoses.
I know IBM has tried doing this, and supposedly always failed. I don’t know the details of their work, but I’m sort of perplexed about whether it really could have been so hard to produce something that at least performs at the level of a mediocre GP and knows when to say “I don’t know, refer to a specialist”. I worry that it might have been compared to a much higher bar than is sensible to use, and that much worse doctors than it retain their license just fine because no one tests them regularly against a diagnosis benchmark.
(anyway don’t worry about the miscommunication, I think the original point got a bit lost in the following comments and we drifted away from it)
Did your blood work show protein deficiency, i.e. low total protein and (serum) albumin?
My personal bloodwork did not. It shows effectively no change over the past two and a half years—including zero change between late last year (when I was having serious difficulties), and last month (when I had been supplementing protein by about a hundred grams per day.)
So I don’t know what that test is measuring, but it doesn’t appear to be related to protein levels.
(It’s also worth noting that not all protein is created equal. I had a fair amount of plant protein in my diet, but the amino acid profile used to make plant cells is not the same as the the amino acid profile needed to build muscle and repair sinew. I believe I was short on specific key amino acids.)
To unpack a little why I asked:
While the remission of your symptoms under protein substitution is of course indicative of protein deficiency as the cause of the problem, it is not very strong evidence, especially given the fact that the initial remission was under an egg rich diet and not protein substitution per se. It is quite possible that another substance in the egg was the active ingredient or that the remission under the egg rich diet was purely incidental. Neither is the absence of hypoproteaemia especially strong evidence that this was not the problem. Unfortunately Medicine is quite a bitch in this regard.
While I am normally not someone to defend the health care system, if your doctors did order the appropriate lab tests and the tests came back negative, I do not think that they had much of a chance to catch your problem. There are just too many alternative explanations including the catchall “stuff we have no way of knowing or finding out with plausible resource allocation” which is probably the most likely hypothesis with problems like yours.
Otherwise your conclusion of “Now, I take what doctors say...” is completely on point and the most important advice you can give to educated people interacting with health care. And I am writing that as a German, so this problem is NOT confined to the US. Btw., in many cases this is not even civilizational inadequacy, but simply owed to the fact that a patient has a lot more info about his personal case and (in cases of a known illness) can easily become a much better expert for his illness that the average doctor who is expected to know something about a whole host of different problems.
What’s worse is that there are no shortage of quacks ready to take advantage of people with problems like yours, and that there are also no shortage of people that get fooled by quacks.
I have often wondered why doctors don’t first ask: What are you eating? How are sleeping? Any unusual stresses in your life?
Because that’s a long conversation and doctors are paid per visit and not per hour.
Congratulations on fixing your problem!
I have an alternative diagnosis though: Maybe it was gout? That is, sodium urate crystals causing inflammation and pain in or around the joints. Toe involvement would very much suggest that, also the fact that it improved relatively quickly with a change of diet. Hips are not the most characteristic complaint in gout but I know two guys in real life who are on low purine diets and one of them is doing it for his hips. Doctors also found clinical indications of wear in his hips when he was around your age, but almost 2 decades later he is still doing great amounts of physical work, just the kind of which is known to be very hard on the knees. He’s not audibly complaining AFAIK. What I want to say with this is that a diagnosis of osteoarthritis is not necessarily the end of the world. It can be that too, of course.
And I also know one case like this in fiction! There’s a Danish-Swedish television drama where one of the characters has scrotal pain and a mortal fear of testicular cancer. He goes to the doctor and is told to lay off the beans because of gout in the hips. Just something I’m primed to notice in TV playing in the background.
Did you eat a lot of beans and lentils before the switch to more animal protein? Legumes have a good amount of purines in them. You mentioned fish and maybe opportunistic meat eating too? Was that small fish with skins, such as herrings, sardines or whitefish? Did you eat organ meats? Liver for the B12?
You mentioned one-legged squats. Ballet dancers do all kinds of high torque one-legged movements hinged at the hip and they often have snapping hips and hip pain; this is maybe because of the tendons are overgrown or just irritated and swollen from having to move in inconventional paths. If the pain returns, try some symmetric lifting for a while.
You mentioned pain after sitting in a weird position. Was that bent forward? That along with lunges making it worse sounds like it’s the iliopsoas and its tendons in the lower end. Also known as hip flexor or tenderloin. When it’s feeling sore avoid rapid and jerking movements like spurts and kicking activities like soccer. Wikipedia articles on snapping hip mention that symptoms in the iliopsoas area, as opposed to the iliotibial band around the greater trochanter, are assosiated with problems with the hip joint itself. I guess gout can be the sole cause without any irreversible damage in the joint. In any case remember that there are legs blown off in Ukraine all the time; many babies in Africa don’t get their hip dysplasia fixed and live a life void of prospects and full of pain, of which you’ve only had a small taste; there’s more to life than sports and running etc.
Disclaimer: I’m not a medical expert. I read professional magazines now and then.
I have great hopes for the new generation of doctors. I was pleasantly surprised when one said something to the effect of: “You did not evolve to be that frail. Don’t blame yourself.” I find this a great improvement from the doctors of old who had to posit all kinds of weird theories just to avoid saying “we don’t know”. Stuff like the theory of retrograde menstruation as the cause for endometriosis, or genetic etiology for common conditions like obesity, literally adds insult to injury: You are the cause; it’s something you did; it’s something you <i>are</i>. It’s all right to entertain different possibilities when you’re doing research, but why bother patients with some unproven trivia that does not help in the least?
I claim that the best practice when encountering common ailments with unknown etiology is to tell the patient that the most probable ultimate cause for the condition is a germ of some sort (Cochran&Ewald). The next most probable cause is some other environmental factor, the patient himself is most likely faultless in this regard. It’s truthful and kind of soothing too.
I agree with your assessment on the current state of the US medical system, and unfortunately always needing to be your own advocate. I encountered a similar situation with my daughter’s feet which pointed inwards from a very young age and affected her gait, causing issues with back pain when she got towards her teenage years. Despite taking her to multiple MDs (with good reputations) including her GP and orthos, they all said she was likely to grow out of it, and shrugged it off. It took a tremendous amount of digging and good luck to find a MD who specialized in gait analysis and knew right away what the root cause was.
She had been born with her femurs twisted almost 30 degrees which resulted in the ball and socket at the hip not sitting properly to overcompensate to keep her knee straight on the other end of the femur. Thankfully, he referred us to probably the top surgeon in the world for these types of procedures who was also local. He ended up breaking both of her femurs clean through (staggered operations so she didn’t have to be in a wheel chair), aligning them properly, and holding them in place with a rod through the center of the bone and the two sections secured with horizontal nails that screw into the main rod to keep everything in place while healing the breaks cleanly. They’ll be removed after around a year.
Quite an amazing procedure performed by a fantastic surgeon, and a great person...Without self advocacy on our part (or eventually hers as an adult), there is a very good chance she would have ended up never getting this diagnosed properly and resolved (and it would have caused major pain issues later in life; it’s not just a cosmetic / gait issue).
That said, I suspect (as an amateur with a background in Biology/nutrition) that there was a good possibility the root cause of yours was actually a vitamin B-12 deficiency resolved quickly by the amount of eggs you introduced. It’s very easy to wind up with one if you were pretty close to true vegetarian and weren’t doing things to ensure you mitigated the risk. It’s extremely hard for me to believe you were not getting minimum protein requirements with nearly any diet unless you were really just eating certain vegetables and no beans/lentils, rice, etc. That said, I’m also wildly speculating as I have no idea what your actual diet was. Just wanted to throw out B-12 deficiency as another possibility especially since it is pretty common in vegans in particular, that would have been another easy test for them to run (which for all I know they did, but again just speculating).
It would be interesting to know what your average diet consisted of as an aside, and apologies for getting off your main point, but it’s an interesting case. Glad you got it resolved either way!
We also have a “someone elses problem” milieu. So the ER’s cant turn away the homeless but they onpy need to “stabilize” them.
Same with you or me really. So things that could be completely resolved with an inpatient stay dont end up with an admission because “cost”. Nothing is definitively “solved” in a timely manner because of managed care.
So thongs are left to stew and get worse (in your case a proper holistic evaluation initially might jave involved exploring your diet vs years and multiple visits to all sorts of docs).
It ends up “costing” more but no one with decision power sees the cost because its spread over time and to different hospitals or communities etc
So the first person to see someone has no incentive to spend the resources to dig deep and then to actually solve the problem.